BY BRAD BUCHANAN
What I want to tell people about graft versus host disease, or GvHD, starts with the fact that this disease is a human creation, and one born out of life-or-death necessity. Nobody chooses to get GvHD, of course, but it usually beats the alternative. In my case, I know that without the 2016 stem cell transplant that produced my acute GvHD I would undoubtedly have died from malignant T-cell lymphoma. So please remember that as you read what follows, and also keep in mind that my experience with GvHD was unusually extreme.
Just before I was scheduled to be sent home from the Bone Marrow Transplant Unit (BMTU for short) in January of 2016, acute GvHD ravaged my epithelial layer. In other words, it covered 70 percent of my body in an itchy, peeling rash; it scratched up my corneas, leaving me blind for eighteen months. It irritated the lining of my colon, producing seemingly endless bouts of diarrhea that left me passed out on my commode for long hours, and sometimes days at a time. Acute GvHD twisted and enlarged my liver, then tore through my abdomen, causing flecks of blood to appear in my stool and torn spots to show up in my lower colon.
The fallout from my acute GvHD symptoms was complicated and painful. For one thing, I had to have my eyes sewn shut to protect them from yet more damage. Some of this damage apparently came from my eyelashes, which, after vanishing during chemo, were regrowing to torment the already ragged surface of my corneas. Even the tiniest, most benign parts of my body seemed to be turning against me, as if determined to convince me that continued life wasn’t worth the effort.
When writing my book about GvHD, Living with Graft Versus Host Disease: How I Stopped Fighting Cancer and Started Healing (Armin Lear Press, 2021) I came up with a list called “My Top 5 Things For You to Know About Acute GvHD.” They are as follows:
1) Acute GvHD can be fatal.
2) Acute GvHD can be curbed with preventative medications and timely diagnosis.
3) Acute GvHD usually occurs within 100 days of transplant day zero, but can also occur later.
4) Some known factors can increase the risk of Acute GvHD: if you have an unrelated, mismatched or haplo donor, a female donor, or total body irradiation prior to transplant, your odds of getting acute GvHD increase.
5) Acute GvHD can attack just about any part of your body.
Number 5 underlines the fact that GvHD results from a mismatch between the immune system and the rest of the body. When this happens, the effects can be incredibly unpredictable. However, in most cases, acute GvHD tends to focus on certain areas: the skin (causing rashes, peeling and blistering), the gut (causing pain, diarrhea, nausea, vomiting, loss of appetite), and the liver (causing jaundice—yellow skin and eyes—elevated enzyme levels, and dark urine).
These are all facts, and as such may be informative to you, but they beg the question: how did it actually feel to have acute GvHD? It felt like I was literally in hell, my eyes and skin burning up, my guts on fire too with alternating pain and nausea. It was confusion and disgust and dismay and anger and sorrow and anxiety slowly giving way to blank nothingness, a sort of drug-induced dreamtime when nothing seemed real or important anymore.
The unpredictable nature of acute GvHD means that many doctors are reluctant to lay down hard and fast rules for what to expect, post-transplant. This is understandable, since many patients, facing possibly terminal conditions making a stem cell transplant necessary, don’t really want to hear too much about the dangers of acute GvHD. This too makes sense, since facing cancer is already a daunting enough challenge. This dynamic, however, may leave patients feeling they did not get full or frank accounts of the symptoms awaiting them on the other side.
For another thing, our knowledge of acute GvHD is still evolving; for instance, it was once thought to be confined to the first 100 days after a stem cell transplant, but it turns out this idea doesn’t hold true in all cases. Acute GvHD can surface much later, perhaps even after the patient has been sent home from the hospital—a scary prospect that almost came to pass in my own case.
The paradox that acute GvHD has, in a sense, saved me from another, even more dire illness, means that I have a lot of mixed feelings about GvHD. These have driven me to use writing as a daily coping strategy, a way to express my gratitude at having survived and my hope for continuing recovery, while trying to convey the pain, fear, and bewilderment of having had both cancer and acute GvHD.
For example, in a poem called “Genetically Modified Organism,” I imagined my new immune system as a child struggling to define itself against unfamiliar surroundings and lashing out violently against it:
one part of me
does not like the others
senses a separate origin
elsewhere
hurts what hinders
its self-expression
Like a clumsy, confused teenager who doesn’t know his own strength, my new immune system reacted in all kinds of strange and unexpected ways:
saws at the quick
of my fingernails
has a bitter distaste
for my tongue
drops hints
of distemper
into my liver
leaves faint-inducing
traces of arsenic
in my kidneys
hates my guts
with a torrid passion
Indeed, having acute GvHD did feel like some evil being had taken root in my body, as if an alien creature who wanted to destroy me were striving to realize its own identity.
I ended the poem by explicitly comparing the new immune system to a younger sibling, once again blurring the boundary between literal truth (my younger brother was indeed my stem cell donor) and the imaginative act of making a comparison:
like an envious
younger brother
who plots his revenge
through a two-way mirror
and watches me
where I blindly suffer
the life-giving
adrenaline
of his anger
There were reasons why my brother might have wanted revenge on me, since I was cruel to him sometimes when we were young. Competitive by nature and close in age (some called us “Irish twins”), we were best friends and worst enemies by turns. In a way, it was absolutely appropriate that he would end up being my life-saving donor, and also that his cells would (despite his best intentions) cause quite a bit of trouble—in the form of the painful symptoms of acute GvHD—when engrafted into my depleted body.
Yet all this trouble was, as the poem says, “life-giving,” and indeed I see acute GvHD as the necessary birth pains of my survival as a stem cell transplant recipient, and therefore as a cause for gratitude. After all, acute GvHD didn’t kill me; although the usual regimen of steroids and immune suppression (prednisone and Tacrolimus, in my case) didn’t control my gut symptoms, I was eventually saved by an “experimental” treat called ECP: extra-corporeal photopheresis. This was a procedure whereby my blood was circulated through a machine, exposed to light and a chemical called Psoralen, and returned to me. ECP slowly but surely calmed down the “angry” T-cells in my new immune system that wanted to wreak havoc on the rest of me. Over the next seven years I had more than 100 three-hour ECP treatments before I felt able to discontinue them and manage my chronic GvHD without its help.
I was very lucky to have had an oncologist with sufficient expertise in GvHD to come up with the innovative idea of ECP. Not everyone who gets a stem cell transplant in the United States is so fortunate. Here, we do stem cell transplants at many different hospitals, not all of which have cutting-edge GvHD experts on staff. In Europe, by contrast, such transplants tend to happen in fewer facilities, but these have more resources and staff for wrap-around care, post-transplant. In my opinion, more resources are needed for the support and care of all stem cell transplant recipients in the USA, especially those who are dealing with GvHD.
As another aspect of my personal education campaign, I have also come up with “My Top 5 Things to For You Know About Chronic GvHD”:
1) Having experienced Acute GvHD makes it more likely that you will encounter Chronic GvHD.
2) In general, chronic GvHD symptoms tend to be milder and more treatable than acute GvHD symptoms and usually disappear eventually.
3) The usual first-line treatment of chronic GvHD symptoms is prednisone, often accompanied by Tacrolimus and/or Cyclosporine.
4) There are second-line treatments of chronic GvHD which can help if the first-line treatments fail or have unacceptable side effects.
5) Chronic GvHD comes in many forms causing problems with the following: skin, eye, mouth, throat and stomach, liver and lung, genital/sexual, and nervous system (there are others to name but these are the most common ones).
Again, these lead to the question: how does it feel to have chronic GvHD? Here I can rattle off another list of symptoms: sore and swollen stomach, itchy skin, lethargy, dry mouth and throat, stiff and sore joints and muscles. These don’t amount to anything like the hellishness of having acute GvHD, but they are a constant reminder of what happened during my 129 days in the BMTU, and that the very same disease that robbed me of the will to survive still dogs my footsteps today.
Frankly, I have often felt that nobody—not a spouse or partner, nor a parent or child, no doctors, nurses or caregivers—can truly understand how it feels to have this disease, my disease. I have been altered in my very DNA; my genetic character has changed, and I will never be the same as before. As one GvHD patient I encountered confessed, heartbreakingly but believably, “I feel like I’ve lost my self.” I know just what she meant. Even my friends and family sometimes seem to forget that, even though I have been “cured” of two kinds of blood cancer, I am still living in the physical and emotional aftermath of those cures.
More importantly, many of the doctors I have seen for my various GvHD-induced issues—my GvHD-related trouble with swallowing (which led to some very scary choking episodes), and for my GvHD-caused eye problems—often seem completely clueless about the cause of the problems they were supposed to be treating. For example, a visit to a gastroenterology clinic brought me and my wife to tears of frustration at being assured that some strange webs of flesh in my throat (known chronic GvHD symptoms) would not recur after being dislodged by some freelancing doctors who were supposed to be merely scoping out the problem.
The nurse practitioner thought I must have acid reflux, although I take a medication to prevent exactly this problem and have felt none of the symptoms of reflux in years. I thought about questioning his knowledge about GvHD. I felt dismissed and flustered. This led to an embarrassing silence. Less than two weeks later, an ENT doctor stuck a tiny probe down my nose and found (guess what?) that those webs of flesh were back. Eventually, they recognized that my swallowing problems were linked to another known chronic GvHD symptom (constriction of the esophagus) and expanded my narrowed throat by inserting and inflating a small balloon.
Yet that nurse practitioner’s lack of understanding and dismissiveness has stuck with me. Clearly, we need much more education about GvHD for medical personnel, for people going into transplants, and eventually for the general public. We need more people to understand that, for many of us, “beating cancer” isn’t the end of our struggle.
